Catherine Smith is a 39-year old woman who is confused, scared,
and feeling terrible. She is generally pretty healthy and active, but this
morning, she woke up feeling queasy. Throughout the day, she began throwing up
and having diarrhea. She wasn’t keeping anything down, so her husband convinced
her to go to the local ER to get checked out.

In the ER, she had an IV placed and blood drawn. A nurse and
then a doctor asked her some questions. She was told she had to drink some
thick white liquid. A couple of hours later, she felt better. She could go
home, right?

No, she was told; she was getting a CT scan. Nobody told her
this earlier, but OK, she reasoned, she has to trust the doctor; isn’t that why
she came here?

So she dutifully got into a donut-shaped machine. A couple
of hours later, she was told that the test was “negative”: she didn’t have
appendicitis or gallstones. Of course not—she had her appendix and gallbladder
removed years ago!

“Good news,” the doctors said to her. “We have “ruled out’
the worrisome things. You can go home!”

But Catherine didn’t understand. Why did she get so sick in
the first place? What was the point of the tests? She was feeling nauseous again—was
this going to keep happening? Is she going to be OK?

**

I’m an emergency physician, and Catherine was my patient.
Actually, I see patients like Catherine every day, patients who are confused
about what’s going on and dissatisfied with their medical care. We in the U.S.
believe that we have the best medical care system in the world, yet our
healthcare consumers are more unhappy than ever. Patients don’t feel like their
doctors listen to them or take their concerns seriously. They are subject to endless
tests, but, at the end of the day, still have no idea what they have or how to
get better. They keep being told that they need to be "empowered patients", but are not involved as an equal partner in their care.

The shared decision-making movement is gaining much-needed
momentum and traction. I applaud it whole-heartedly. Yet, the movement so far
has focused on shared-decision for treatment.
Don’t get me wrong; it’s very important for patients to share in the decisions
about weighing chemotherapy agents versus surgery for cancer, deciding between
lifestyle changes and starting medications for high cholesterol, and so forth.
What I argue is that patients have to be involved in an even earlier and more
fundamental part of the decision-making process: the diagnosis.

Why is the diagnosis so important? First, it’s important for
you to know what you have before you can treat it. You have to know what
disease or process you have so you know what to expect, what to watch out for,
and what you can do about it. Throwing medications at symptoms just masks them,
but doesn’t get at the root of the problem. Second, not knowing what diagnoses
are being considered is equivalent to searching for a needle in the haystack:
it’s aimless and dangerous. Tests should be done to narrow down diagnoses, or
else results are going to be obtained that don’t make sense, and you still
won’t know what you have—like Catherine.

Wait a minute, you might be saying. Isn’t it the doctor’s
job to figure out the diagnosis? How can patients possibly help in this process,
if you are not the ones with the medical training? My patients are surprised
when I tell them that, actually, they are key to their diagnosis. At first,
they don’t believe me. With time, they understand what I mean that only you can
convey to your doctor the symptoms you’re having and the story of your illness.
Only you can help your doctors narrow down the possibilities and arrive at the
answer. Only you can be sure that your doctor listens to you and focuses on
getting you to your diagnosis. Only you can really advocate for your
healthcare.

I go as far as to tell my patients to never leave their
doctor’s office without getting a diagnosis. It doesn’t have to be the final,
100% definitive diagnosis; after all, it’s very rare to be 100% sure of the
exact cause of each and every illness. Catherine probably had a stomach bug—a
simple viral illness. Am I 100% sure it can’t be something else, like food
poisoning? No, but nor do I have to be 100% sure, because the management and
the expected course of her illness will not change. And with every symptom,
there are the “scary” things to watch out for, in this case, things like
ectopic pregnancy or ovarian problems.

It’s important to consider these scary causes, but “ruling
out” problems should not be the only goal. In fact, the goal should be to arrive
at a most likely diagnosis. This is
what will aid you in guiding your decision-making and your thinking about what
tests, if any, are needed. This is what will inform your understanding, your questions,
your treatment, and your follow-up.

It is critical that you work with your doctor to make sure
you are an equal partner in the process of getting to your diagnosis. My next
post will address what, exactly, you should do to engage in this key first step
to shared decision-making. In the meantime, I welcome your comments, and also
invite you to visit the website for my forthcoming book, When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests.

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About Me

I am an emergency physician and public health leader with a passion for patient advocacy. Inspired by my experiences as a caregiver to my mother, I work to educate and empower patients and families so that they receive the best care possible. I received my medical training at Washington University in St. Louis and Brigham and Women's Hospital and Massachusetts General Hospital in Boston, and now serve as the Director of Patient-Centered Care Research, Attending Physician in the Department of Emergency Medicine, and Assistant Professor of Health Policy in the Milken School of Public Health, at George Washington University. My book is When Doctors Don't Listen: How to Avoid Misdiagnoses and Unnecessary Tests; more information at
www.drleanawen.com // @drleanawen